Joint hypermobility is caused by the increased compliance (stretchiness or give) in the connective tissue that makes up the structures that hold the joints together (joint capsule and ligaments). This increase compliance also affect connective tissue in other parts of the body, and this may cause a number of problems including:
Bladder problems and bed-wetting
Low blood pressure
Esophageal reflux
http://www.skillsforaction.com/
How had I missed this? It makes such sense, it ticks the boxes. I thought I knew, I thought I was proactive. Yet what I am reading alarms me. In fact it does a hell of alot more. It scares me because I can now see the hypermobility symptoms and I can match them up to each of my children.
It now it all makes sense and I need to do something with this learnt knowledge. I suffered and that’s the last thing I want for my own. Yet I have seen the signs. Since DD2 was born it has been somewhat clear – unfortunately for her she is the worst affected but I can see that DD1 (now diagnosed with hypermobilty) DS1 (undiagnosed) and DD2 (diagnosed hypermobility syndrome possible EDS111) are all affected.
Hypermobility Symptom s Diary
I want to go back in time and present my teachers with today’s literature. When I was at Uni I wrote a letter, a long letter, to my sixth form centre. A letter never to be sent but that needed to be written. I cried as I wrote, it wasn’t easy. They wrote me off – they refused to listen, to attempt to understand. I didn’t fit their model yet I wasn’t initially that far off. I had been the perfect student, I tried hard and I got involved with extra curricular activities. At my secondary school I was a good student, I joined in with orchestra and sports. I was involved and then it all changed. I got sick yet not many truely believed me. I hurt.
I still can’t put into words what changed but everything changed. One day I felt awful as I stood up. I passed out. Yet it was a strange sensation I knew I was falling, I couldn’t breathe yet I was somewhat aware. I ended up in hospital, I was tachycardic but nothing could be found. The same happened the next day and the next. I was seriously concerned. I said that I hurt. Yet no-one was listening. Over time it got worse. Afterwards I was ohh so tired. So so tired. Looking back, hindsight is a wonderful thing. I know I am hypermobile, it caused issues back then but it doesn’t now.
Yet if required I will turn that anger I still hold to fight for my children. I will not allow them to suffer and to be doubted.
Tomorrow Erin has an appointment with a leading expert – an appointment I asked for. I am learning that you have to talk loudly if you want the NHS to listen. I want her to have a care plan before she starts school I have one year and the clock is ticking. I hope tomorrow brings answers. Yet I am reticent too. I don’t really want a label, I don’t want her to hide behind anything she is such a trooper and keen to try everything. Yet I want others to understand and to know how hard some things are for her.
Tonight I am a little anxious and what tomorrow brings.
2 Responses
Good luck with getting some answers and decent support, plus someone who’ll listen and help fight your cause. I’ve got other online friends with children who’re also suspected of being hypermobile, and they’re also struggling. It seems to be an uphill battle in particular when young children (‘too young to be diagnosed’ or to fit into care/support allowances) are involved. Really hope you get some joy
Thank Emma, Erin gets some support due to her hip dysplasia but really want a plan in place before she starts school nest year. Hypermobility seems to be so misunderstood.